When you have Cancer why does our Health System make life more difficult?

  

It’s been awhile since you’ve heard from me – and that’s been deliberate on my part. My last post wasn’t my finest work as I wrote about some of the negative aspects of my cancer journey. Afterwards I gave myself a serious talking to and decided that if I couldn’t put a positive spin on things that were happening, I wouldn’t bother. ‘Cause describing the bad stuff seems to make me feel worse and keeps me focusing on all the wrong things. But, in the interests of full disclosure, I have been writing – I just haven’t posted anything ‘cause most of it’s crap.

To paraphrase Robert Burns… “The best laid plans of mice and men often… ”

So… This is going to be about some of the negatives that still seem to be trying to rule my life. And I’m rationalizing my decision to write about them by telling myself that someone who reads this might become forewarned, and be able to avoid the situation I’m now in.

To recap a little…

It’s just over twelve months since I was diagnosed with cancer for the second time in six years. As I’ve wandered along through scans, tests, clinics, consultations, surgery and radiation therapy, I’ve met and interacted with a lot of very smart, dedicated and emphatic people who work in both the Medical Profession and associated services. Everyone has been fully focused on making sure the right decisions were made to ensure I received the best care possible – in the moment. But, when those moments pass, and there’s no one looking at you, asking “How can I help?” Who do you turn to when you need help, guidance or support? Perhaps the Cancer Society.

I had a bit to say about this organisation in my last post, and I felt a little guilty afterwards, so I sent a link to the post to a Manager at the Cancer Society, asking for feedback on the post and for any comments they wished to make. Here’s the response I received…

“Hi Chris,

I just left a garbled message on your phone.

I have passed your email and link to your blog to the Supportive Care team in Hawke’s Bay. I have asked them to read your Blog (very good and identifies a number of areas we need to work on), and get hold of you re any support we could help you with. Either Angie or Pauline will give you a call at some stage.

I will follow up the team on Monday to make sure you have had some contact.

Kind Regards”

I received this email on 12^th. September. As I try to be an eternal optimist, I’m still hoping someone will contact me. 

Perhaps tomorrow… perhaps not.

Anyway, my big issue at the moment – the one that keeps me awake most nights – is to do with money. When plans for my treatment in Auckland were being made, we were told that travel and accommodation costs would be covered by the Hawkes Bay District Health Board. Not long after that I received a letter from the National Travel Office, letting me know that my upcoming travel and accommodation costs for treatment in Auckland had been approved for financial assistance. So, with assurances from everybody involved – off we went.

Now here we are, three months after the end of treatment and… to be quite blunt about it, the Hawkes Bay District Health Board – and or – the National Travel office, still owes me a significant amount of money. The silly thing is, they know they do and acknowledge that I need to be paid, but, for some reason that no one wants to explain to me, it seems they’ve both decided that it’s the other’s responsibility. The result of this standoff so far… 

No money for Chris.

No… I’m not saying anything more about the six weeks of living in a motel room while going through radiation therapy. I just want to forget it ever happened. But afterwards, I sent all the paperwork for the accommodation costs to both the National Travel Office and the HBDHB. Then we went home -  took money out of our savings to pay the credit card bill – and started to focus on putting our lives back together.

Now, here we are, more than three months later, and the silence from both the National Travel Office and the HBDHB has become deafening – to the point where I don’t even know how to start to find out how to get some money back. Two weeks ago, I rang the National Travel Office to ask about the status of our claim, only to be told that it had been declined, and referred to the HBDHB.

When I spoke to a person at the DHB (the only person I know that I thought might be able to help), I was told the claim had been sent to the “Panel” for approval and that I should hear something from the DHB in a couple of days. When I asked how to get in touch with the “Panel”, I was answered with an alarming degree of waffle about systems and processes that clearly indicated the person I was talking to either didn’t have a clue who the “Panel” were, or were very disinclined to tell me how to contact them.

So here I am, writing this and thinking about “what ifs”…

What if… I had gone to Palmerston North for therapy instead of Auckland?

                  I’d probably only have one eye and be struggling to write this rubbish.

What if… The Cancer Society had been able to give me accommodation at Domain Lodge in Auckland?

                 We’d be thousands of dollars better off.

What if… The Cancer Society had arranged alternative accommodation in Auckland?

                 We’d be thousands of dollars better off.

What if… The National Travel Office had been able to arrange accommodation in Auckland?

                 We’d be thousands of dollars better off.

What if… The Hawkes Bay District Health Board did what they said they would and paid us back?

                 We’d be thousands of dollars better off.

What if… We didn’t have the savings to be able to pay thousands of dollars for accommodation?

In hindsight, and knowing now what I didn’t know then, I would have asked for the Radiation Therapy to be delayed until accommodation became available at Domain Lodge. I know that everyone would tell me not to do that, because there’s an optimum window that all the experts seem to agree on – being within forty-two days after surgery. 

In my case – I had surgery on 12^th. March and started Radiation Therapy on 11^th. July. This is a period of 120 days. Would an extra week or two have any real material effect on my survival chances given I was already so far outside the recommended timeframe?

Anyway, it’s all hypothetical now and doesn’t really matter. I just want them to give me some money back… as they said they would.

Now, here’s a question… Should I send this to Fair Go?

... too late!

So... What happens now?

A couple of different people that read my little missives have asked me what I think about particular aspects of the Health System, and more specifically, how I feel about the new proposed Cancer Agency. I’ve been kinda reluctant to do this, ‘cause I know my views are heavily biased by my own experiences. But, after reading David Downs’ book “A Mild Touch of the Cancer” (there’s a link to this book on the right) and watching the development and progress of Blair Vining’s petition, I thought – why not. Maybe my thoughts will resonate with some of you, and I guess even if I manage to get a few of you nodding as you read this, it’s probably worthwhile.

I think this is going to turn out to be quite a negative rant, (which is not my favourite kind), because there’s some issues I keep dwelling on, and maybe the only way to get them out of my head is to write about them.

So… for those of you still reading, here we go.

There’s been a lot of press lately about “Post Code” medical care and it sounds like we’re now going to create another level of bureaucracy to oversee the existing bureaucracy we have in place because no one can get the multitude of DHBs we have in this country to talk to each other.

It’s all well and good to have agencies and DHBs reporting to the Health Department. But – where’s the tangible and practical support and assistance for the patients?

How can an organisation like the Southern District Health Board go on reporting growing Radiation Therapy waiting lists, and people being forced into private care – or withdrawing from care because they can’t afford it - without anyone doing anything about it? I know - there’s a new Linear Accelerator on its way south. But, in my view, this will only fix part of the problem – and I guess I’m now talking about every patient, or carer, who has to travel to receive medical care of any kind. As a result of this travel, they have to “suck up” all the associated expenses. I guess we can’t all live just down the road from the hospital. Where’s the help for these people? And I guess, just as importantly, how do they find out about any help that is available?

  

The new Cancer Agency will sort this out, you say.

Will it really?

How?

Let me tell you why I’m sceptical…

Medical professionals are all focused on providing the very best medical care for their patients that they can. This is a given, and I for one, am extremely grateful for their efforts. But, for a lot of patients a huge issue is the financial burden placed on them when receiving this care. I know there are other agencies and organisations that can provide financial relief for patients but, in my experience, this relief is very limited and always comes after the event. In other words, if Joe Average, who live fifty kilometres away from the nearest hospital gets sick, he has to use up all his sick leave, holiday pay and probably the bulk of his savings, while his partner and carer has to work extra shifts to keep some money rolling in, before being eligible for any financial relief, and, even then, this relief will be very limited.

It’s a pity he doesn’t live down the road from the hospital – in the same way it’s a pity I don’t live in Auckland.

Let me explain…

Back in March of this year I was admitted to Auckland City hospital – remember, I live in Hawkes Bay - to have a Squamous Cell Carcinoma removed from under my right eye. That in itself proved to be a very expensive exercise. Anyway, the proposed follow up treatment included six weeks of Radiation Therapy which was to happen in Palmerston North. After, what seemed like, and actually was, a long wait, I was scheduled to start the therapy at the end of July. For reasons which I won’t go into, a few days before I was due to start, it was decided I would be better off if my therapy was done in Auckland.  Now… to my simple mind, this would have created a gap in the Radiation Schedule in Palmerston North. So…

             

Did someone in Palmerston North report this gap, or did a queue shuffle at Mid-Central DHB just automatically happen?

If someone was to report this gap, who would they report it to?

If the person in charge became aware of this gap would they think to ask around the country to see if anyone is in urgent need of therapy? (Pencil in new Cancer Agency.)

Who at Southern Districts DHB would they ask?

Let’s suppose, by some miracle of modern communication, the Southern Districts DHB became aware of this gap in Palmerston North’s schedule, who would then decide which patient from Southland would receive the therapy?

Now for the hard question…

Who pays for a patient from Southland to receive treatment in Palmerston North?

If I had gone ahead and received my radiation therapy in Palmerston North, Denise and I would have stayed at Osnam House at no cost, and the Hawkes Bay DHB would have paid the Mid-Central DHB for my treatment. As my treatment was done in Auckland, the Hawkes Bay DHB paid Auckland. But who paid for our accommodation? That would be us, so… we’re now thousands of dollars out of pocket.

Don’t get me wrong. I’m grateful I get to keep my right eye, which wouldn’t have happened if I’d received treatment in Palmerston North. The point I’m trying to make is… what if a patient being sent to a different DHB can’t afford the additional expenses? Do they simply not go? Or do they have other options?

What about the National Travel Assistance scheme, you ask?

Well… If they’re not able to arrange pre-paid accommodation with their own DHB, the patient has to pay and claim it back. In our case, for our first stay of four weeks in Auckland we received less than half the amount we claimed… four months after we sent the claim in.

So, what am I actually trying to say here?

Yes, I’m in favour of the new Cancer Agency, mainly because what we have isn’t working. But let’s make sure we don’t put all our focus and resources into numbers and statistics. Let’s remember the patient. It would be great to see some initiatives directed at relieving the load for those undergoing treatment, and this is now going to lead me into my next diatribe.

  

Here’s another question – Where’s the Cancer Society when you need them?

Turns out, they only get involved if you contact them.

Or do they?

Here’s a statement from their website:

“You do not need a referral - in fact - due to privacy issues we are not given your name or contact information by your doctor or health professional.  To access our services we need to hear directly from you or your carer.”

This brings up another question – What privacy issues?

I really would have welcomed and appreciated a visit from a representative of the Cancer Society while I was recuperating in Auckland hospital. I’d always been under the impression that if you developed cancer, a routine action, after diagnosis would be to make sure you were given information about the support they could provide. Silly me.

So, why didn’t I contact them? Well… keep reading. I had this impression that the Cancer Society was an organisation that dealt with advocacy and representation on a broad scale, primarily with the Department of Health. Seems I was right. What I didn’t realise was that there’s a significant “disconnect” between patient care in hospital and patient care after discharge.

  

Now I accept they do great work and help a lot of people. However, as things turned out, I’m not one of them. Looking back, I realize that I needed to know a lot more about them at the start of this journey. But, how was I to know that?

Should I have expected someone from my Surgical Team to tell me about them? Should I have expected someone in the Hospital to tell me about them? Should I have expected anyone – at any time through this journey, to tell me about them?

But… if I had contacted them, could they have helped? As I’ve since discovered… probably not.

I gotta say – our Auckland experiences weren’t nice. Some months ago, we had occasion to spend a couple of days at Osnam House in Palmerston North. This is a dedicated accommodation complex specifically for people with cancer and their carers and is operated in part by the Cancer Society. This experience created an expectation in my mind of what it would be like in Auckland during my treatment. Unfortunately, the reality was very, very different.

Even though it’s behind us now, unfortunately, the experience has further coloured our opinion of the Cancer Society and not in a good way. I’ve gotta say – in my particular case – they’ve been of little, to no help at all, throughout this entire saga. Every interaction we’ve had with them has resulted in disappointment. Over the course of these interactions they’ve received my contact details on at least three occasions and the silence afterwards has been deafening. Maybe it’s because my particular cancer pathway deviated from the norm. Being from Hawkes Bay and getting treatment in Auckland just seems to kick you into the too hard basket. The distinct impression we get is that our local Branch of the Society is only focused on providing transport to Palmerston North and fundraising. Or am I being a bit harsh?

Anyway, I thought to myself, maybe a closer connection with the Cancer Society will change my view. So, I volunteered to be a collector for Daffodil day, assuming there would be an orientation session beforehand to explain how it worked. Maybe this would give me an opportunity to talk to some of the people more closely associated with the Society. Well, wrong again. A phone call to ask me if I could be at the designated location from 1:00 to 2:00 and that was me, done.

So, I duly reported to the Flaxmere supermarket at 1:00 where the collector I was relieving gave me a high-viz vest, a lanyard with a card attached saying I was an ‘Official Collector” and a bucket. She went on to tell me that things were quiet and that donations had been a bit slow. Well, that soon changed.

Now, for those of you not familiar with Hawkes Bay, Flaxmere is arguably at the bottom of the socio/economic scale in this region and has a reputation for being a “not very nice place”. But, collecting for an hour at their local supermarket certainly opened my eyes. There weren’t a lot of people about, but of those that were, I would guestimate that between sixty to seventy percent of the people who passed by, made a donation. Without counting, I know I collected well in excess of $50.00 in the hour I was there. This might not be much in the great scheme of things, but knowing Flaxmere and the local economy, I thought it was outstanding.

  

There was one particular guy who walked up to me and asked how much the little plastic daffodils were? I explained to him that they were given out when someone made a donation and he replied: “I’ll take four. But I’ll get them when I’ve finished shopping” and off he went.

When he came back, he handed me change from the loaf of bread he’d just bought – about $16.00 – and explained that he wanted four because he had a wife and two children at home. I’m pretty sure he couldn’t really afford it, but this is just one instance of the generosity I saw from these wonderful people.

So, what’s going on in my life now? I’m just starting into my third week post-radiation and I think I’m doing ok. I’ve been doing a bit around the house – just an hour or so each day. Going for some short walks as well. Gotta say, the walks are a struggle. I’ve tested out every park bench and seat I’ve passed. My sleep pattern’s all over the place. Sometimes I can’t sleep through the night and end up staying in bed ‘till lunchtime. Other days I’m up  and wide awake at 4:00am. The aches and pains come and go. Nothing too bad. It’s getting harder to work out if the aches are related to the therapy or just old age. I know what my wife thinks.

I got a phone call from Auckland Radiation Oncology on Wednesday, asking me to confirm my follow-up appointment in Auckland at 1:00pm on Thursday. When I told the lady on the phone that this was the first I’d heard of it, and that no travel arrangements had been made, she became very defensive and told me it was on my calendar. When I asked her; “what calendar” things became a bit tense. Anyway, she ended up saying she would let the doctor sort it out. Haven’t heard anymore about it since. Hopefully they’ll decide to let the Hawkes Bay doctors do the follow-up. Time will tell.

Anyway, that’s me for now. I hope I haven’t been too hard on the Cancer Society, but we really could have done with some support and direction along the way. Hopefully those with more “mainstream” cancers will have a better experience.

Remember…

Radiation Therapy - Past Halfway

It seems like forever ago I started Radiation Therapy – so far I’ve had eighteen of the thirty sessions I’ve signed up for. (Sounds like a Gym membership, doesn’t it?) At first the novelty of it all was a little bit exciting, but it certainly wore off pretty quickly. Once again, we weren’t able to get into Domain Lodge. No one’s actually said anything but I‘m pretty sure if you come from south of the Bombays (as we do) you go to the back of the queue. Sorry, for those that aren’t Kiwis, the Bombays is a line of hills to the south of Auckland that separate it from the rest of New Zealand – both geographically and culturally. So, we’re staying in a motel just down the road from the hospital, and by down the road, I mean, down the hill.

Remember when I came to Auckland to get the rust cut out? Well, thinking it was the right thing to do we came by car. Denise ended up staying in Auckland for a month, waiting for me to sort myself out and for that whole month, I think we used the car three times, and ended up paying an eye-watering amount of money to park it each night. So, this time we decided to leave the car at home. A good plan, ‘cause using buses and Ubers has been cheap and easy. The only downside – the hospital’s on top of a mountain. Well… that’s what I reckon. Each morning the hill to the hospital seems to get steeper and steeper. And wetter and wetter. Have I told you about how it rains in Auckland?

Before I started treatment, everyone said, “you’ll probably start to feel fatigued after the first couple of weeks.”

Ha! Were they wrong!!

Before the end of the first week, all I wanted to do was sleep – and sleep I did. As well as sleeping eight plus hours through the night, most days I’m now sleeping another four or five hours through the day. My best (or worst) effort was into bed at 10:00 am – after treatment and up at four. My poor, darling wife. Not only does she struggle to get to sleep most nights, she gets to watch me sleep for most of each day. Luckily, it’s not too far to the Newmarket shops and cinemas, so she can escape occasionally. If it’s not raining.

 

It’s a shame the Westfield Centre isn’t open yet.  It’s a huge shopping complex that’s being refurbished in the middle of Newmarket. From what I can work out it’s taking years to finish, but after walking past it a dozen or so times in the last few weeks, it seems to be providing a great deal of long-term employment. It’s easy to spot the workers – unless it’s raining.

  

You can watch them wandering down the street at all times of the day, or standing around in their various tribal outfits. They pretty much always seem to collect in tribal clusters, sporting different coloured plumage. The easiest and most common variety seem to be the “Yellow Vests”.  But there are also quite a lot of the “Orange Vests” variety as well. Both types are scattered all over the place in small groups, and if you listen closely you can hear them chatting amongst themselves while standing about conserving energy. Sometimes you’ll see a group of them marching behind a “White Hat” heading for some unknown, but obviously important, location, and you quite often see them during feeding times at the local Café or Takeaway.

There’s also a third group. These are the “Pink Vests” and are a much rarer variety and a lot harder to spot. Both the Yellow and Orange Vest groups seem to be controlled by these Pink Vests and you’ll quite often see the “Pink Vests” gesturing and pointing to direct small groups of the other coloured groups in different directions.

  

I wasn’t really aware until we went exploring in the city, but it seems there are different colonies of these groups scattered throughout Auckland. We spotted all the same groups, doing the same activities when we wandered down to the bottom of Queen Street. Apparently, as is the case in Newmarket, these colonies have been in residence for some considerable time and it seems the locals are expecting them to stay for quite a while yet. While the employment opportunities and influx of resources is helping a lot of the locals surrounding the various colonies, I believe some of the locals are becoming frustrated with the disruption and mess and are attempting to shorten the length of time these colonies stay.

I kinda wish I could shorten the length of time I’ve got to stay. I know… I should consider myself lucky – and I do. I won the Post Code lottery. Another few weeks and it’ll all be a memory. It’s not the therapy that bothers me - sometimes I almost fall asleep on the table. It’s not the hospital – everyone’s very nice and always friendly, even if sometimes they seem to be on autopilot. It’s not even Auckland that bothers me – even if it’s raining. I think it’s just that I’ve got no energy. I stagger up the hill every morning and then try to act like a human being for the rest of the day, but sometimes – it’s easier just to go to bed.

Sorry folks – but just trying to concentrate while I write this is too hard, so nite nite.

Radiation Therapy - I'm starting to understand what's involved.

I scanned the barcode, like you’re supposed to. Instead of the “Self Check-In” machine walking me through the check-in, like it was supposed to, it printed out a slip of paper that told me I required assistance with my plane ticket and to see an Air New Zealand representative. So, I looked up and spotted a bloke, standing behind a Check-In counter with, what appeared to be, a permanent frown on his face - probably caused by the long line of passengers he was facing, all waiting to find out why they  had little slips of paper telling them they needed assistance. So, like a good little Lemming, I joined the queue.

Turns out, most of the domestic flights in and out of Auckland have been cancelled because of fog. The 10:15 flight I was booked on now becomes the 14:20 flight. Mmmm, challenging. I’m supposed to have my first radiation therapy treatment at 15:30. How do I fit a one-hour flight and a thirty-minute shuttle ride into the forty-five minutes I’ll have between arriving in Auckland and my appointment time in Epsom. After pondering this for a while, and applying my High School maths to the question, I decide I’ve either got to use my superpowers to make the plane get to Auckland faster – or – phone the Radiation Lab and let them know what’s going on. End result – my first radiation session has been put off until the next day.

I never realised – “Unaccompanied Minors” has become a big thing now. Apparently as a result of the huge increase in modern day “blended families”. While I was waiting for my flight, I watched a couple of other flights come and go, and each of them had four unaccompanied minors on them. The flight I took had five as well. Anyway…

Because Auntie Arben had been staying with us in Hawkes Bay, Denise decided to stay behind and come up to Auckland with her later in the week. For some reason, known only to females, she’d liberated a heap of Pam Ayres CDs from the library and the girls listened to them all the way from Hawkes Bay to Auckland. 

Glad I was flying.

Next day and I’m off for my first session. According to the famous explorer, Mr. G Maps, it should take about fifteen minutes to get from our hotel to the hospital. But I thought I’d better take a leaf out of my wife’s book and leave an hour early – so I arrived at the hospital an hour early. But that’s OK. Turns out they’ve got all the latest Reader’s Digest magazines in the waiting room – so…

Why does a man twist his wedding ring on his finger?

He’s trying to work out the combination.

They call it the “Bunker”. It’s where the Linear Accelerators are. There’s three in this facility. Four months on from my surgery (almost to the day), and despite all the appointments and scans I’ve had, this is the first time I’ve seen one.  They’re pretty impressive machines. These three are the latest and greatest and have CT scanners attached to them. Remember how I was going to have this treatment in Palmerston North with a “not very nice” outcome? Apparently the CT scanners and the newest software are the things that are going to save my eye.

The “round” bit above my head is the “business end”. That’s where the radiation beam comes from. The flat plate opposite, is the CT Scanner. The way it works is that after they’ve bolted your head in place, the head of the machine rotates around you while a CT scan is taken. They compare this image to the planned image and small adjustments to the machine and table are made by the software to make sure they deliver the dose to the exact same place every time.

Ever wondered what it looks like to the experts?

This is me.

The yellow line defines the area that cops the full radiation dose. The green line is like a cliff. The radiation dose drops to “bugger all” (that’s the correct technical terminology) when it gets to this line. The outer blue line defines the total area affected by the treatment. Each day the CT scan, combined with the software, makes sure that the dose is delivered with an accuracy of less than one millimetre. Pretty fancy, eh?

So, two down, twenty-eight to go. We’re staying at the Alexander Inn in Newmarket. We tried to get into Domain Lodge (run by the Cancer Society) but for the six weeks that we’re in Auckland, they only had a week’s vacancy. Given the increasing numbers of patients requiring accommodation and the plans to centralise more of the treatment facilities in Auckland, I wonder if it’s time for them to think about expansion, or another facility?

Anyway, this place is nice. We’re in a large studio room at the moment – bedroom, kitchen and lounge combined – but we’re probably going to move to a one-bedroom suite in a few days. The management here have been very accommodating. I’m pretty sure they had to move a few other guests around to get us in on such short notice. (Two days).

After the treatment today we walked down to Newmarket on a bit of a discovery tour. Found a Yoga Studio, so Denise has signed up for some classes. Lots of nice shops and plenty of places to eat. No supermarkets. There was one in the Westfield complex but it’s being done up at the moment, so the nearest one is about a thirty-five minute walk. 

Quite a way to go for a loaf of bread.

No treatment tomorrow so we’re going to try our luck with the buses. We’re planning to try to get to Castor Bay. Could turn out to be an adventure, but if we get stuck there’s always Uber. Let’s hope the rain’s stopped by then.